Your Guide to Early Melanoma patient information packs

21 October 2015

4 questions with Lani Teddy, Melanoma Institute Australia Research Project Manager who was a driving force in the team to create the new information packs Your Guide to Early Melanoma.

What is “Your Guide to Early Melanoma” and how will it help patients?

People’s need for information following a melanoma diagnosis varies a great deal. When people have questions, whether about melanoma generally or specifically about their diagnosis, treatment, or follow-up care, they often don’t know where to turn or what information to trust. “Your Guide to Early Melanoma” is a dedicated information resource for people diagnosed with Stage I or II melanoma.

How long did the project take and who was involved?

A number of health professionals, a GP, surgeons, dermatologists and clinical nurse consultants provided content and feedback. We were fortunate that a group of ten volunteers (patients, carers and family members) also thoroughly critiqued an early version of this resource. People who have been through the experience of a melanoma diagnosis have thought about the types of questions they had when first diagnosed, what information they have gone looking for since and provided suggestions not only on the content, but also more broadly on how the resource should look and ideas about how this should be distributed. And of course we are very grateful to have the support of Neutrogena, without which this work may not have happened. The resource took about 8 months to produce from first draft to printing.

It is believed that patient support is a missing resource. How are the support packs addressing a support and information need?

There is a lot of variability in the types of information and support that people are after. Some people want to know about support groups, some people want to see pictures of melanoma, others want to understand the way melanoma is staged and have questions about nutrition, sunscreen, Vitamin D, prognosis, genetics, what happens at follow-up…the list goes on. Some people want to know everything up front, others only want to know what is relevant right now, and may have questions later on. While the information and support packs won’t provide all the answers, they are a good starting point and provide a lot of references if people want more in-depth information. It is also something that can be shared with family and friends if they have questions about melanoma.

What is psychosocial care and why is it so important for patients?

Psychosocial and supportive care is about recognising and responding to the numerous ways that people are affected by a cancer diagnosis. The provision of information that is easy to access and easy to understand is one part of the much broader scope for supporting patients and families through diagnosis and treatment. Patients (and their families) require a holistic approach to treatment, which therefore includes addressing psychological, social, dietary and physical issues as well as excellent medical care.